Tex

[JLH]

Would you please post the entire email that you wrote for Beth's newsletter? I printed out the shortened version for my doctor but realized the original would be so much better. Thanks.

[tex]

Joan,

Sure. It was just a rehash of my original post about it. It strikes me as being rather disrespectful of the opinions of those three doctors, though, so I'm not sure it if any other doctor would appreciate my remarks. If you want me to rewrite it, and tone it down a bit, I'll be happy to do so, just let me know. Here it is, in it's original form:

Dear Beth,

I have been reading every issue of your newsletter for a couple of years, (ever since I discovered it), and I am always interested in seeing what you have to say, since I own and administrate a discussion and support board for microscopic colitis, (MC), and related issues, and those related issues most definitely include gluten intolerance, even though most people who have MC and do not have fully-developed celiac disease, (CD), (as per the official medical definition), will virtually always test negative to CD, when analyzed by the "gold standard" CD serology. Furthermore, over the years, many, many members of my discussion board have been very succesful in achieving and maintaining total remission of MC symptoms, by means of diet alone, while others, who are unable to achieve remission by using the conventional treatment prescribed by their doctors, usually involving treatment with one of the 5-ASA medications, or a corticosteroid such as Prednisone or Entocort EC, (budesonide), have found that they can remove gluten, (and usually casein and soy), from their diet, and thereby attain remission. Sometimes other food intolerances must be removed from the diet, but gluten is the primary offender. By doing so, virtually everyone who is a member of my board, (provided that they are willing to give the diet a fair try), is able to either achieve remission, or at least see significant improvement in their symptoms, by removing gluten and other foods from their diet, regardless of the fact that they might have received no benefits from the treatment prescribed by their GI doctor.

Therefore, even though I am well aware that you had nothing but the best intentions, when you asked those three esteemed doctors for their opinions on Enterolab, I was very distressed to see that you did your readers a grave disservice by printing, (which implies tacit approval), the gross distortion of the facts, that their response to you comprised. If you will review virtually any of the many celiac discussion boards out there, you will readily see that Enterolab has many, many satisfied customers, and to date, at least, I have never noticed a post by a single client who has found any reason to dispute their test results. I have absolutely no connection with Dr. Fine, nor Enterolab, (except as a satisfied customer), but I find the "official" position of the medical "experts", to be absolutely appalling, in this situation. I realize that you are very busy, but this is important, and if you will bear with me, I will proceed to prove that everything they said in that response to you, was patently incorrect, (with the exception of a single statement).

I will point out right up front, that my formal education lies in the field of engineering, and I have no formal medical training, (other than the basics), but even I can easily see through their thinly veiled claims, to clearly discern that there is no substance in their position. Here are the claims, (in blue), that they made in their response to you, with each claim followed by my observations.

1. “There is no scientific validation in the stool tests performed and sold by Enterolab in the diagnostic process of celiac disease or "gluten sensitivity".

This claim is 100% wrong. First off, their site specifically states that they make absolutely no claims about diagnosing celiac disease, but that is irrelevant, anyway, because they definitely do make claims about being able to detect gluten sensitivity. Furthermore, the procedure used by Enterolab has indeed been validated by an independent laboratory in Italy, and the report was published in the February, 2004 issue of the Journal of Autoimmunity. Here is part of what Scott Adams, the founder of Celiac.com, had to say about the discovery, at the time:

"The new technique is similar to that developed and long utilized by Dr. Kenneth Fine of Enterolab, in that both techniques look for the presence of antibodies in the intestinal mucosa rather than in the blood. The new technique also has the potential to easily screen large numbers of people, which, if the researchers are correct, will lead to a celiac disease diagnostic explosion, as those who are missed by current screening methods will be properly diagnosed. The number of celiacs who are missed using current screening techniques is a topic of debate, and Dr. Fines methods have demonstrated that "in normal people without specific symptoms or syndromes , the stool test is just under three times more likely to be positive than blood tests," as reported in the Winter 2004 edition of Scott-Free newsletter. It would be very interesting to see how many people test positive in a healthy population using this new technique."

http://www.celiac.com/articles/740/1

Here's an abstract of the original article, written by the research team:

http://www.sciencedirect.com/science?_o ... e510afeeb3

Okay, on to the next claim:

2. Their website quotes "immune sensitivity to gluten is exceedingly common, present in 30-40% of all Americans" which is enough to tell what level of scientific accuracy they reflect!

Since they have no scientific evidence to dispute Dr. Fine's claim, they chose to attempt to discredit the research work by trying to make fun of it - a rather unprofessional gaffe, don't you think?

3. The same applies to their way of testing for milk protein allergy (not lactose intolerance, which is a digestive deficiency they do not test for).

This is another irrelevant remark. Apparently these "experts" don't even recognize the significance of the differences between digestion issues caused by an enzyme deficiency, and an autoimmune reaction. If they do know the difference, then they are "conveniently" ignoring it, for the purpose of enhancing their "misguided" claims about Enterolab, which would be rather disingenuous of them, if true.

4. Regarding their tests for tTG and anti gliadin antibodies in stool, most with celiac disease have positive antibodies in stool, though not all and some non celiacs have positive antibodies as well.

This is mostly true, and it's the first intelligent statement to appear in their response. It's also one of the primary justifications for stool testing in the first place.

5. We however do not know the number of non celiacs (normals, or those with reported gluten sensitivity) that have these antibodies.

Here, they proudly profess their ignorance again, and therefore admit that they lack the proper qualifications for making the judgments about the validity of Entoerolabs proprietary technology, that they have so brashly presented, in the first place. They claim to be experts on celiac disease. So why haven't they done the research that would enable them to properly address those questions? Obviously, such knowledge would be a very valuable addition to their knowledge base, regarding the detection and treatment of celiac disease.

6. It is not a standardized test. Also I have seen reports from their lab about these non celiac, gluten sensitive genes. I have never heard of these from any other source.

This is just another admission of ignorance, devoid of any scientific evidence. "It is not a standardized test." Well duh! Why on earth would they expect new technology to be a standardized test? That's why it's patented - because it's not the same old obsolete technology that they're familiar with.

"I have never heard of these from any other source." Of course, ignorance is an irrelevant point, in relation to new technology, but in this case, prior documentation does indeed exist. Instead of disputing new technology, maybe these guys should be doing a little more research to see what has already been discovered, and reported in the literature. Not only has Dr. Fine discussed these genetic issues, but the HLA DQ1 marker has also been discovered, (and well documented), by Dr. Mario Hadjivassilou, as being associated with a non-Celiac form of gluten sensitivity. While those who carry HLA DQ1 rarely show villous atrophy, it does occur in some cases. Since about 1-2% of biopsy-proven celiacs carry the HLA DQ1 gene, it would seem be a rather questionable practice, to rule out Celiac Disease, solely because of the absence of the main genes, (HLA DQ2, or HLA DQ8). Accordingly, while most celiac experts twiddle their thumbs, and fail to recognize the HLA DQ1 genetic markers as being associated with celiac disease, Dr. Hadjivassilou has found HLA DQ1 in about 20% of his gluten sensitive, (antigliadin positive), neurological patients. The remaining 80% have either HLA DQ2, or HLA DQ8, consistent with the general celiac population. Dr. Hadjivassilou is a well-known neurologist located in England, with over 40 published medical research articles to his name. Here's a quote from "Gluten sensitivitiy as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones:

"Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with CD: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

Also, remember that virtually every pioneer who has made a valid scientific "breakthrough" discovery, since the beginning of recorded history, has almost always garnered seemingly endless ridicule, contempt, denials, etc., from his or her peers. "Experts" are almost always suspicious of new and contradictory claims, by their very nature, (and rightly so, because many false claims are made), and it may also be true that they are somewhat "jealous", of any Johnny-come-lately who tries to steal the spotlight, by trying to "horn in" on their territory, so they may subconsciously feel obligated to do all they can, to keep new technology from replacing their old, familiar concepts. Interestingly, I can't keep from wondering if this tendency might be somehow related to the basic breeding competition, so prominent among representatives of many species, who compete so fiercely, in order to assure that their genes are passed on, rather than the genes of their "competitors".

The bottom line is, despite my non-medical background, it didn't take me long to locate convincing proof that disputes each and every point of contention, that they presented in their most disappointing response to your e-mail, when you asked for their opinion. Why couldn't they find that information? They're the ones who are supposed to be the experts. And, if you want to talk about celiac specialists tending to be behind the times, consider this quote, from the 2004 book The Neurology of Gluten Sensitivity: Science vs. Conviction, by Hadjivassiliou and Grunewald.

"The prevalence of coeliac disease itself is now recognized to be 20 times higher than what it was thought to be 20 years ago because most cases are clinically silent."

The "experts" you quoted, most likely attended med school at least 20 years ago, FWIW. Obviously, Dr. Fine, (of Enterolab), is not the only one who thinks that the celiac "experts" are only diagnosing "the tip of the iceberg". Despite all the incriminating evidence listed here, I'm not claiming that Dr. Fine is the victim of a conspiracy of some sort, but the facts sure do look rather suspicious, don't they.

Thank you very much for your time, and for your consideration of the facts that I have presented here. I certainly don't expect you to print a retraction, since you probably feel a need to maintain a "politically correct" newsletter, but I do sincerely hope that in your heart, you recognize that you have been grossly misinformed, by several "experts", who should certainly know better.

Best regards,

Wayne Persky administrator

Microscopic Colitis Support http://www.perskyfarms.com/phpBB2/index.php

My mailing address

A couple of my e-mail addresses

My phone number

[JLH]

Thanks very much. See why I need coffee?

[tex]

You're most welcome,
Tex

[angy]

thats totally excellent letter tex...well done...

[tex]

Thanks Angy, but I don't believe that many GI docs will agree with you.